Home Ā» Rare diseases: haemophilia, the ninth stage of the ‘Articulate’ tour in Vicenza

Rare diseases: haemophilia, the ninth stage of the ‘Articulate’ tour in Vicenza

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Milan, May 27 (beraking latest news Health) – Taking care of the joint health of patients with haemophilia through new services, training sessions with reference specialists and a site full of clear and useful information in everyday life. In addition, the possibility of undergoing joint screening thanks to portable ultrasound scanners that are arriving in numerous Italian haemophilia centers. These are the ingredients of the success of ‘Articoliamo’, a traveling campaign supported by Sobi with the patronage of FedEmo, created to promote joint well-being in people with haemophilia, a rare coagulation disease that has arthropathy among the most frequent complications. Over 5 thousand Italians with hemophilia, of which more than 300 in Veneto.

The tour, now in its ninth stage, arrives in Vicenza with an online meeting scheduled for Saturday 29 May. The appointment is for 9.30, open to all and free. By connecting to the zoom platform (https://us02web.zoom.us/j/82219995016#success), participants will be able to discuss in live streaming with Ilaria Nichele, hematologist of the Hemorrhagic and Thrombotic Diseases Center of Vicenza; Ermes Vedovi, physiatrist at the Verona hospital; Anna Artuso, surgeon specialist in hematology; Stefano Giaretta, orthopedist of the Uoc Orthopedics and Traumatology Oc San Bortolo of Vicenza; Anna Chiara Giuffrida, head of the Hemophilia Center-Uoc Transfusion Medicine Aoui in Verona. Theme of the meeting, promoted by Avec (Venetian Association for haemophilia and coagulopathies), ‘Joint health first of all: from prevention to early diagnosis’.

The experts will address different aspects of haemophilia: the importance of the multidisciplinary approach and prophylaxis, the role of physical activity and proper nutrition, the treatment and prevention of joint damage through early diagnosis. Objective: “To raise awareness among patients on the importance of prophylaxis of long-term half-life factors and on the key role of ultrasound to detect joint damage early and avoid severe arthropathies,” explains a note.

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“On Avec, as well as on all associations, the pandemic has weighed heavily – says Matteo Arzenton, president of the association – The restrictions on the activities in the presence, the commitment of all health personnel in the fight against Covid and management problems and organizational issues have made it very difficult to be able to give live and present support to our members during the months of strict lockdown. We are happy that, thanks to the doctors of our Hemophilia Center and beyond, and with the support of Sobi, we can start from a beautiful event on joint health, one of the areas that has the greatest impact on the life of a haemophile. “

“Hemophilic arthropathy – emphasizes Nichele – represents the main complication of haemophilia and consists in chronic damage to the joints as a consequence of recurrent hemarthrosis. Regular prophylaxis aims to prevent bleeding and consequent joint damage and is today more and more personalized on the basis of the patient’s needs and lifestyle, in order to guarantee protection and adherence as optimal as possible “. Also for Vedovi “arthropathy is the main complication of haemophilia: the prevention and slowing of the progression of joint damage are one of the main objectives of prophylaxis. Periodic assessment of the joint status is crucial for the early diagnosis of arthropathy also in patients with moderate haemophilia A. It also makes it possible to monitor the therapeutic adherence of patients on prophylaxis and helps in therapeutic choices “.

This is the message that we articulate addresses to patients and caregivers, recalling the golden rules for correct prevention: “Guaranteeing adequate protection with prophylaxis therapy, the best strategy to reduce bleeding and keep the skeleton and muscles in good condition; taking care of oneself through physical activity, an important goal for preventing joint damage and keeping the musculoskeletal system in good health “.

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Yet, according to a national research commissioned by Sobi, with the coronavirus emergency 34% of people with haemophilia have stopped exercising, with peaks of 50% in patients with a severe form of the disease.

The survey also shows that only 57% underwent joint screening in the 9 months prior to the interview. And, as experts worry most, 43% of respondents have never done so before. Instead “periodic joint screening and physical activity – the promoters of the initiative reiterate – are fundamental elements for preventing joint damage and micro-bleeding, not always evident, which over time lead to loss of functionality. Thanks to ultrasound screening of the micro-bleeding and constant physical activity, today it is possible to avoid and even prevent joint problems and loss of mobility “.

“Sobi has always considered it important to promote the care of the person with haemophilia that takes into account aspects and variables that go beyond the drug alone – declares Sergio Lai, Vp and General Manager of Sobi Italy – Our commitment in carrying out the campaign We articulate in all of Italy was born from the deep conviction that, only through multidisciplinary work, it is possible to allow people with haemophilia to open up to a free and full life, protected and safe. It is important to remember that all this is possible thanks to the correct therapeutic strategies available and clear and complete patient information, for a life without compromise, protecting the joints and improving general well-being “.

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